Stakeholder focus groups: Assessing caregiver needs

In 2004, TDoA conducted a series of focus groups throughout the state involving caregivers, service providers, and other community stakeholders. The purpose was to obtain information on the needs of informal caregivers, the services available to them, their general level of access to those services, and any significant gaps in the system. Findings from these focus groups, unpublished until now, have been analyzed and grouped into five general areas of need:

The need for information

Employment

Caregiving in rural areas

Grandparents and relative caregivers, and

Coordination of services

What follows is a discussion of each area of need along with various recommendations that were identified and proposed by the participants of the focus groups.

The need for information

"People are just sitting out there wondering what they're going to do with their grandmother. For children, I think it's a little bit better because you have the school system. I'm going to go to my school principal. But for elderly people, if you take your older parents to the doctor's office and ask, ‘I need some respite care,' or ‘I need whatever,' they're going to go, ‘I don't know.'"

"I have a college degree. I'm a well-known, intelligent person. I have no clue where to turn for help. It's not necessarily whether you're a PhD or a GED, it's hard to know where to turn."

— quotes from stakeholders present at the Panhandle focus group

Background

Most caregivers do not plan to be caregivers and, therefore, tend to be under-prepared for this new role in their lives. This results in some new caregivers not knowing
where to turn to find information about available resources to obtain assistance. Consequently, this becomes one of the biggest barriers to informal caregivers having access to the services and supports they need. Further complicating this problem
is the common failure of caregivers to "self-identify" — that is, describe themselves as caregivers for the particular purpose of obtaining assistance services. Without this self-identification, caregivers may not even be aware that they could qualify for assistance, and providing them with services and supports in a timely fashion can be that much more difficult.

Though there are considerable resources committed to providing useful information, the results remain inconsistent. According to participants in the regional focus groups, there are three key problems they face in accessing information: finding information about an illness or medical condition with which the care receiver was diagnosed; finding resources in their community to assist with providing care; and finding information when it is needed.

Medical information

When provided with a medical diagnosis for their loved ones, caregivers participating in the focus groups indicated often feeling they did not have enough information about a disease or condition, or its progression. They did not feel equipped to handle the patient's needs — physically, emotionally, or financially – and expressed a need for more information at a time when they could most benefit from having it. This was exacerbated for caregivers of individuals with Alzheimer's disease, who often require additional support from the medical community to help deal with the disease.

In the case of Alzheimer's patients, caregivers face high levels of stress and often require emotional support, counseling, and education programs about the disease as they strive to provide a safe and comfortable environment for the individual for whom they provide care. Physicians and other health professionals can be pivotal in helping provide critical information and resources. With adequate training, caregivers can learn how to control unwanted behaviors, improve communication, and keep the individual with Alzheimer's disease in the community. Research has shown that caregivers greatly benefit from training and support groups, and that participation in these groups typically allows caregivers to care for their loved one at home longer. [47]

A fairly recent development in the caregiver support arena is the use of evidence-based programs. In Central Texas, Scott & White Hospital has teamed up with the local AAA to administer the Reach II program, which includes a risk assessment and follow-up with information and resources tailored to meet the needs of the individual with Alzheimer's and those of family caregivers. More information on this innovative project can be found at the Rosalyn Carter Institute website. [48]

Awareness of community resources

The need for general information about provider services in the community was cited by focus group participants as an ongoing issue for many caregivers. Many participants — particularly those dealing with caregiving issues for the first time — found navigating the system of caregiver services to be challenging. Caregivers listed word of mouth as their primary means of obtaining information on services, while some also reported that they relied heavily on AAAs for that information.

Despite the long-term presence of AAAs in communities throughout the state, many participants reported not being aware of them at all and were unsure of where to turn for assistance. The 2008 Aging Texas Well (ATW) Indicators Survey [49] found that 66 percent of older individuals in Texas had never heard of AAAs, the same result the survey found in 2004. [50] 2-1-1 (a statewide, comprehensive information and referral service), however, has become significantly more recognized in the community as a source of information. Twenty percent of those surveyed by the ATW Survey were aware of 2-1-1 in 2008, compared to only 8 percent in 2004. [51] In the focus groups, caregivers expressed the need for making better information available through outlets such as medical offices, targeted mailouts, and other information channels.

Information is currently available to caregivers from a variety of sources including:

AAA information and referral system;

2-1-1 telephone system;

Aging and Disability Resource Centers (discussed in detail later within Coordination of services section); and

Websites such as Family Caregivers Online [52] — a collaboration of the Dallas County, Tarrant County, and North Central Texas AAAs to provide information for caregivers in one convenient location.

These agencies and programs represent some of the critical, "front door" resources that provide invaluable service to caregivers and consumers; however, more awareness of the availability of these services and supports is needed.

Timeliness of information

Providing timely information services was also identified by the focus groups as an important factor in reaching caregivers. In general, potential caregivers do not pay attention to information about formal resources until a specific need arises, making it difficult to reach them. This also underscores the importance of identifying caregivers as caregivers — it is difficult to reach caregivers at the right time, especially when individuals may not yet identify themselves as caregivers.

One approach has been to collaborate with employers to reach out to working caregivers. Organizations such as AARP are encouraging employers to take a greater role in making caregiving information available to employees. [53] This increased awareness of caregiving issues could play a role in making information available in a timely fashion and in helping caregivers self-identify.

Stakeholder recommendations

There is a clear need to make it as straightforward as possible for caregivers to access information about available services and supports. Caregivers participating in the
focus groups often indicated being confused about not only what services are available to them, but also about the various types of services that would benefit them most as caregivers. The following is a list of recommendations that were identified by focus group participants, aimed at addressing caregivers' lack of information about available resources.

Increase efforts to ensure that doctors and other medical professionals are
informed about local support services and further ensure that they are making this
information available and known to patients.

Support efforts to ensure that caregivers receive information about patients' diagnoses that is accurate, clear, consistent, current, and easily accessible.

Consider the use of an assessment tool that accounts for

the unique needs of both the caregiver and the care recipient,

identification of symptoms of and interventions for burnout, and

the need to distinguish between dementia vs. non-dementia caregiving.

Develop a one-stop resource (e.g. website, call centers) that provides thorough
and easy to understand information detailing the services available for consumers
and caregivers.

Raise awareness about the availability of services provided through AAAs.

Support and encourage strategies at the local and regional level that will inform the public about caregiving. These should utilize and integrate the most common "critical pathways" to support, such as health care practitioners, pharmacists, discharge planners, and faith-based community organizations.

Promote the establishment or enhancement of partnerships among health and social service providers to coordinate expanded support group activities.

Ensure that outreach activities encourage those already providing care to loved ones to self-identify as caregivers.

Examine the feasibility of public service announcements in areas where resources are underutilized, encouraging the use of available resources. This would require identification of underserved populations and the best means of communicating information to these markets.

Consider less focus on generic information production and dissemination, as this may not always be cost effective. Promote locally and regionally specific information campaigns that address the particular caregiving issues of that community.

Increase the availability of hands-on training for family caregivers. One example is the American Red Cross Family Caregiving Program. [54]

Footnotes

DADS Aging Texas Well (ATW) Indicators survey is designed to assess how older Texans throughout the state are faring with respect to the ATW life areas, perceptions of their well- being, preparedness for the future, and awareness of available community resources. Findings are based on surveys of 1,100 age 60 plus individuals in a stratified random sample, with interviews in both Spanish and English.

U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services. (2004). When Employees Become Caregivers: A Manager's Workbook. (Publication No. CMS-11035). Retrieved July 14, 2009, from http://assets.aarp.org/www.aarp.org_/articles/careers/ EmployeesBecomeCaregivers.pdf